Designing for Caregiver-facing Values Elicitation Tools

Full paper: https://doi.org/10.1145/3613904.3642214

In contexts of serious illness, caregivers making decisions on behalf of incapacitated patients face unique challenges. Existing values elicitation tools - which are primarily designed for patients - often fail to address the unique needs of caregivers. This study, involving 12 caregivers, employed a research-through-design approach to evaluate tools specifically tailored for caregivers. Findings highlight caregivers’ need for greater support in understanding their own values, interpreting patient values, and reconciling these perspectives. While caregivers express a preference for tools that foster family consensus, they tend to use these tools individually rather than collaboratively. Additionally, a general lack of awareness about the role of values in decision-making underscores the necessity for tools that both educate and assist caregivers. Lastly, tool designers must strike a balance between integrating top-down directives and incorporating bottom-up, user-driven values. This research offers critical insights for the development of more effective caregiver-centered values elicitation tools.

Presenter: Dr. Foong is the Head of Design at the Telehealth Core, a research centre that supports and studies the design and development of patient-centred eHealth projects. She has a Masters in Human Computer Interaction Design and a PhD in Interactive Media. As an avid design practitioner, she brings more than a decade of international experience to her teaching and academic research. She is part of the team that has attracted millions in funding for digital health solutions in chronic disease prevention, and more recently patient and caregiver support in planning for the end-of-life.